On February 18th, 2011, our lives were changed forever when our son Christian Taylor Buchanan entered the world. He was born with a bilateral cleft palate and lip and almost completely blind. This blog is the story of his life, the joys we share, the challenges we encounter, and the amazing and trying journey ahead of our family!

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Christian Taylor Buchanan

Thursday, May 18, 2017

An Inside Look at Sensory Issues

When someone doesn't have personal experience with sensory issues, when neither them nor someone they are intimately antiquated with have sensory issues, I can only imagine what that looks like from the outside looking in.

A few things that I often wonder if people see when they see my kids struggling with sensory issues include

"What a brat!"

"If that was my kid I would.....X, Y, Z."

"Why doesn't she just spank that kid and make him stop acting like that."

"If she would just X, Y, Z, then her kid wouldn't have these issues."

That's not an exhaustive list.

In my on going effort to make the world more knowledgeable about disabilities and to promote the acceptance and integration of people with disabilities fully and wholly into our society, I want to talk about what sensory issues really are, and what they really mean to the people who have them and the people who love people who have them. I hope this post serves to create some understanding and bust some myths. In not way to I intend this post to cover every area of sensory issues or apply to every person with sensory issues. I am fully aware that this may not apply at all to some folks who have sensory issues. This is simply one family's view of what it looks like for them.

Sensory issues can present in so many different ways because we are each so unique as individuals. You might be familiar with the term sensory processing disorder (SPD), which is a common diagnosis for people with sensory issues. These issues happen because the brain has trouble organizing information from the senses. People with sensory processing issues can be oversensitive to light, sounds, textures, flavors, smells, and other sensory input. (Thanks, Google.) Christian has what is known as "sensory defensiveness," which is a step down from SPD. He doesn't have full SPD, but does show sensitivity and defensiveness to certain stimuli.

A few weeks ago, my dad came over to patch a hole in our wall. We had a hole about the size of a fist in the dry wall in our hallway, courtesy of Mr. Chandler and a light saber toy. So, my dad came over to patch it for us. Part of that process included sanding some putty on the wall after it dried. That resulted in a fine dust on the floor. My dad swept the dust up and all was well.

A few days later, I heard Christian calling for me and found him in the hallway, next to the patched drywall, with his arm stretched straight out away from his body. He had found a tiny amount of that drywall dust lying on the edge of our return vent. My dad and I had both missed it in cleaning up. (In our defense, there is no light in that hallway, lol!)

I looked at Christian's hand because it was jutted out towards me, and I saw some white powder on his finger tips. No big deal, I could just wipe it off right? Not really for Christian. I took him sort of my the wrist since his hand had the dust on it, and was attempting to lead him to the kitchen to wipe his hand when he said this to me, "Mommy, I'm scared."

Christians speech, while amazing compared to where it was a few years ago, is still more limited than a typical six-year-old's speech. So, his being able to verbalize this to me was the first time that he had used words to describe to me how he felt when he was in an uncomfortable sensory situation. I mean, I knew that he didn't like it. He told me in other ways. He would cry or scream when I tried to sit him in grass when he was younger. We went to the beach several years ago and Christian literally refused to put his feet down on the sand. When we tried to stand him on the beach, he held his feet up as high as he could get them and climbed me in fear of his feet touching the sand.

I knew that he didn't like certain sensory situations. I knew of several things specifically that he didn't like, but, he had never used actual words to tell me how he was feeling.

I crouched down to him and began wiping the dust off his fingers with my hand and telling him that he didn't have to be scared. I always try to have a "no big deal" attitude towards those specific things that I know set Christian off. The whole situation was resolved quickly when Christian was away from the dust and I had wiped his fingers, but the words he said to me never left me.

He was scared. Granted, he was scared of something completely harmless and that I would never even think to be scared of, but he was scared. Christian doesn't understand that there isn't anything about sand or grass to be scared of. If he did, he wouldn't be scared of it.

You know how children go through that phase of thinking there is a monster under their bed and there is no convincing them differently for a while? So you take them by the hand and help them look under their bed every night until they are certain the monster isn't there. It's the same with this. When Christian is scared of something, having a hard time with a certain sensory issue, there is no convincing him that it's safe in that moment.

His sensory issues resolve over usually long periods of time with slow, consistent, repetitive, and gentle exposure. It can literally take years to show him that a texture or item is safe. You can't simply set him in the sand and say "See! It's safe!" and expect him to be okay with it. You have to start with a tiny amount in the palm of your hand or in a bowl for example, allowing him to touch it ever so lightly with a single finger tip for just a few seconds. Then you do that twelve more times. Then you encourage him to touch it with two fingers, then three, and you do that twelve more times. Then you encourage him to touch it for five seconds, then ten, and do that twelve more times. Eventually, you start talking with him about the idea of lying the sand in the palm of his hand. You keep on practicing until he agrees to the idea of the sand in his palm, allowing him to dump it out when he needs to. Then you work your way up to five seconds, ten seconds, twenty seconds. Eventually, he might be comfortable sticking a finger into the sand, and the pattern repeats. You continue to move towards touching with the foot and practicing standing on it for several seconds and building a tolerance to that. If at any time Christian has a negative experience with the sand, say for example I decide to just force him into the sand before he is ready and it scares him, we start back at square one, and maybe even further back than he was before we started and the entire process has to start over. Forcing a child to interact with things that they struggle with sensory wise in forceful or aggressive manners simply doesn't work. It literally creates trauma for them and reinforces to them that their fear of that sand was justified. So, you can see why something so simple could take months, and you might even have a better idea of why it is taking years to get Christian ready and willing to eat foods.

Here's an example for you. Imagine something that you are deathly afraid of. I'll use myself as an example. I am terrified of bugs and spiders. It doesn't matter the type. I don't even like ladybugs and moths. Yes, I am aware they are harmless. I don't care. I don't like them. Continue telling me how harmless they are and let's see how much I care. Hint: I won't! :D :D :D

So, imagine this thing you are so scared of, and imagine that someone forces you into a room full of it, locks the door, and tells you "Stop being a baby. It won't hurt you." I imagine myself in a room full of every kind of bug imaginable, spiders, roaches, those ugly rhinoceros beetles, wasps, caterpillars, every creepy crawly thing you can think of, all landing on me, buzzing past my head, some biting me maybe. **BLECK** I feel like saying "I would die" is not overly dramatic. Would that ever work to cure my fear of bugs? No. Absolutely not. In fact, it would probably traumatize me and make me that much more afraid of bugs. That's how I imagine it would feel to Christian if I tried to force him to stand in that sand barefooted or run his fingers through it. It is terrifying to him. It doesn't matter that I know it's not harmful to him. It doesn't matter that it's not actually harmful to him. What matters is that it DOES scare him, that he legitimately feels unsafe when he encounters those things that he struggles with sensory wise, and the most important thing I can do for him is validate his feelings and be gentle and consistent when he does have to encounter those uncomfortable sensory situations.

Sensory issues are not just kids being misbehaved. They aren't just kids who need a good, swift pop on the rear. They also aren't parents who just need to make their kids suck it up and deal with it or be more strick. When it comes to sensory issues, it simply doesn't work that way. If it did, I promise you, I would much rather just make Christian deal with it and be over it than spend months or years building his tolerance to sand and grass and paint and dry beans and cooked noodles. So, for someone on the outside looking in who doesn't understand, consider this. If there was a simply way to rid Christian of his sensory issues and prevent his struggling, don't you think I would do it?

I hope this helps shed some light on sensory issues from a mom's perspective. I hope this helps some folks understand a little more what it's like to be Christian and deal with some of the things he deals with. He is stronger than he looks and braver than he seems. Don't underestimate him! He may not be able to touch sand without fear, but I hope that won't be something you use to make a judgment of his character. I hope you will look at him and see all the things he can do.

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About Me

I am a Christian, mother, wife, daughter, aunt, sister, and friend to some amazing people. I am a student at Nashville School of Law. I work at a daycare. I am passionate about disability advocacy and education.